Friday, July 18, 2014

So, a few months ago I got an app by Hooked on Phonics for Miss Sunshine. I can't say enough fantastic things about this app. Miss Sunshine loves getting to "play" on the tablet, and I love that she's learning while playing.

She has begun reading short books within the app on her own, and is learning the principles of sounding out and joining sounds to read words. One thing I have noticed, though, is that she struggles with letter sounds that are similar on some of the activities where she has to listen for a sound or word. It concerns me, because I don't know if it is her not giving her full attention, or if it is a result of her hearing loss. Or even if it is a sign that the hearing loss has progressed more. I tend to torture myself with worrying about it, which is not good for anyone.

I wish I knew what the answers were, but this is just another uncertain part of our journey, I suppose. It is hard, as a parent, to not have all the answers. It is hard for me, the control freak, especially. Just one more thing I can't automatically fix for her. I hate the fear and uncertainty that surrounds every visit to the ENT, every time she complains of an ear ache, every time she answers "What." When I say something to her. That insidious little voice in the back of my head whispering that maybe this time it will be too far gone, that this time will be the time we have to order that hearing aid.

I have to make sure to tell her new teacher that she needs to position Miss Sunshine so that her left side faces the teacher, so she can hear her more clearly. To let her know that if Miss Sunshine is not looking at her and focused on the conversation, she may not respond. Not beaches she is ignoring, but because she honestly cannot hear her. I hate it, but it's a conversation that must be had.

The hearing aspect is something most people never think about when it comes to cleft. So often I have heard "You know, our child had lots of ear infections and we opted not to do tubes. They hear just fine." It's different for a child with cleft. It's not about infections. It's about persistent fluid in the ears because the palate doesn't function properly. It's about scarring, and loss of movement, and the possibility of permanent hearing loss. Yes, there can be infections. And these things are all risks of infections as well, but for Miss Sunshine it's different. It's not about infections for her. It's just another round of surgeries she has to face in the list of surgeries she has. One more thing about her cleft that We have to compensate for, deal with the best we can.

Monday, July 14, 2014

Miss Sunshine is obsessed with princesses. If she's not in her school uniform, she's in a princess dress. In fact, she was reduced to tears earlier today when Daddy Mac informed her she needed to take her princess dress off so he could wash it.

I have to be honest - the whole princess thing drives me CRAZY. I don't want my daughter growing up thinking that the way someone looks is more important that what is on the inside. I don't want her thinking she needs a man to solve her problems. I want her to love herself for who she is, to be strong and independent and ready to face the world. I worry that this obsession with princesses and all things pretty is setting up a level of abnormal expectation in her eyes. At the same time, it makes her so incredibly happy, and she is so incredibly confident in herself, that I just can't bring myself to take that away. Because isn't that what we all want, in reality? A happy child who loves themselves?
And the truth is - she is beautiful.

Wow, it's been a terribly long time since I've been on here, hasn't it? I suppose that comes with the territory of working, going to nursing school and raising two kids.

So, updates. It's summer break here. The kids are crazy, and I think we are all about ready for school to start back up. We went to Disney World in May, and it was AMAZING! Seriously, it was the best experience we could have hoped for. The kids are already talking about when we can go back.

Miss Sunshine had another surgery after we came back. This time, she had the impacted tube removed, and the ENT did a patch on her eardrum. Because her last several tests have showed no fluid in her left ear (where the eardrum is intact), the ENT felt it was time to repair the right ear. Surgery went well although recovery was a bit nerve wracking. She did not want to wake up, and then didn't want to drink anything post op. And they wouldn't let us leave until she had something to eat or drink and kept it down. She finally sucked on enough of a Popsicle for us to go home. Then it was on to the daunting task of keeping a five year old from doing any gymnastics type activity, and getting no water in the ear of a child who has hair down to their butt. Not stressful at all. We had our initial post operative follow up three weeks after surgery - so far so good! Her eardrum even had some movement, which the ENT said was unexpected. Her hearing is still down, but that is normal with this surgery. We go back at the beginning of August for a hearing test to see where she is at. This surgery was necessary, so we had little choice in regards to doing it, but it does carry the risk of hearing loss. And since it was on the ear that already has hearing loss, that was a bit scary. In addition, prior to the surgery, she was borderline for needing a hearing aid in that ear, so if she does have hearing loss as a result we will be dealing with that as well. Obviously, Mommy is a bit of a mess with this next appointment looming over us. Happy thoughts would be great about now.

Monster Boy has struggled a lot this year. We began having major issues with his behavior at school back in October. It got very bad very fast, and we were at our wits end. He was finally diagnosed ADHD in December, and after much reluctance, we started medication in January. I believe medication has a purpose, and I am not against using medications when necessary. That said, I do try to avoid using medication unless it is 100% needed. I don't medicate for low fevers, coughs, etc. so putting him on a daily controlled substance he will likely need at least through school, if not life long, was intimidating to me. It was a difficult decision, but it was absolutely the right thing to do for our child. After starting the meds, it was like I had my son back. I am not naive. I realize my children can be difficult, handfuls. And downright crazy at times. But his behavior was so far beyond that, that he really wasn't the kid I knew anymore. Since starting the meds, he brought his grade in behavior from an F to an A! I couldn't be more proud of the strides he has made, and I look forward to the new school year rather than dreading it.

Things have been difficult for us as a family the first half of this year, and the road ahead is sure to have more twists and turns as we go along. But I'm beginning to see a nice, straight, clear stretch of highway in the distance, and I know we can make it to the easy point of our journey if we just keep on moving forward.

About this blog

About Me

Hi, I'm Mommy Mac. I'm a part-time-working, full-time-studenting, mostly stay-at-home mom. I have one amazingly supportive, loving, wonderful husband, and I have two beautiful children: Monster Boy, my almost ten year old too-smart-for-his-own-good genius, and Little Miss Sunshine, my five year old diva/princess-in-training. Miss Sunshine was born with an isolated cleft of the soft palate, which was diagnosed at birth, and pretty much rocked our world. This blog is my place to get down to the heart - or, in our case, the cleft - of the matter...

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The Kiddos

Say hello to Monster Boy and Little Miss Sunshine! Of course, they are a lot bigger now - but really, this photo is just too cute not to use...

Monster Boy

Monster Boy is eight going on sixteen (at least in his eyes!). He's a bit of a know-it-all with a very Type A personality - which can sometimes make for interesting conversation, especially with two OTHER Type A personalities in the house. He is smart, out-going, loving, kind, and a joy in general - well, minus the attitude he's so good at copping. But we wouldn't have him any other way!

Miss Sunshine

Little Miss Sunshine is my FIVE year old terror. She has personality in spades these days, and doesn't slow down for a second! She is our joy, and we spend each day with her living life to the fullest. With all of the ups and downs that we have been through with the discovery of her cleft and subsequent treatment, we are looking forward to our next phase - life after palate repair.